Soapbox: Time to boost our awareness on debilitating bowel disease

Aug. 29, 2013

A new awareness ribbon has arrived in Fort Collins. The IBD & Ostomy Awareness Ribbon is on a mission to reverse the negative perception surrounding Crohn’s disease and ulcerative colitis, better known as Inflammatory Bowel Disease, IBD, and ostomy surgery. The ribbon is chocolate brown, has a red crystal in the center, and cream-colored lettering. This design and color combination sparks needed dialogue that leads to education, awareness, support and empowerment. But why a brown ribbon?

I was 17 when I heard the words, “You don’t have appendicitis; you have Crohn’s disease and weigh 62 pounds.” I’d been misdiagnosed for nearly two years, telling my parents and numerous doctors that something was terribly wrong, but nobody listened. Despite aggressive steroid therapy that morphed me into a puffy chipmunk with a voracious appetite, a restrictive diet, and two bowel resections, the disease mounted a steady assault on my colon and rectum over the next decade and a half. Knowing the exact location of a bathroom wherever I went was a necessity, and I carried spare underwear and made other clothing adjustments because bowel incontinence was a humiliating part of my daily life. Over the years, the walls of my world gradually closed in until the only place I felt secure was in my own home and bathroom.

After being in denial for years about the state of my health, I realized being bathroom-bound and watching people’s feet go by was not living. I couldn’t yell out, “Where’d you get those shoes?” The phrase and DSW didn’t exist yet! In 1986, I made the decision to have my diseased colon and rectum removed, resulting in a permanent ileostomy. For the first time in 19 years, I was able to have a full, active life. I know the joy of sitting through dinner or a movie without having to run to the bathroom. I can go hiking and camping — activities I could never do prior to ostomy surgery. I no longer worry if my body will betray or embarrass me. Ostomy surgery gave me back what Crohn’s disease took away — my life!

(Page 2 of 2)

Wanting to make a difference, a friend, also with Crohn’s disease, and I took my idea to the next level and set out to make the first ribbon. After gluing our fingers together, we quickly realized this was beyond our expertise. A vendor, website and Facebook page soon followed. This gusty brown ribbon — what part of the body are we dealing with? — isn’t content to add bling to blazer lapels! “It’s more than a ribbon, it’s a movement!” The ribbon has been sent to eager individuals throughout the United States as well as Australia, Canada, Malta, Nova Scotia and the United Kingdom. Now the ribbon has arrived in the Rockies and Fort Collins.

The ribbon is a project within Get Your Guts in Gear Inc. GYGIG is an independent national, not-for-profit organization that produces programs and provides critical funding for awareness, research and advocacy projects within the IBD community. GYGIG brings together patients, family, friends, medical professionals and cycling enthusiasts for an unforgettable and empowering experience.